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No life after thyroidectomy
Did total thyroidectomy 2 years ago and since then I have not had a normal life. I'm 35 and I have always done martial arts, running and other sports, but now, I can hardly stand.
My parathyroid glands were preserved and have no problems with Vitamin D, calcium, magnesium, iron, potassium etc.
All my blood tests are normal and I am currently at a dose of 125 mcg. The problem is that I feel a lot of fatigue, muscle and joint aches, pain in the soles of the feet and bradycardia. When I make some effort my pulse goes to 130, 140 bpm and I very badly.
Several doctors put me at higher doses as 137 mcg. If I take 137 mcg, my TSH and T4 are becoming "normal", but feel pain in all the nerves, muscles and bones of the body. Definitely that dose not allow me to be well.
Do not know what else to do. I lost my job for my health issue and I am also losing my wife. They all think I'm going crazy and even I'm starting to believe it.
Does it have something I can do to fix this problem?
My parathyroid glands were preserved and have no problems with Vitamin D, calcium, magnesium, iron, potassium etc.
All my blood tests are normal and I am currently at a dose of 125 mcg. The problem is that I feel a lot of fatigue, muscle and joint aches, pain in the soles of the feet and bradycardia. When I make some effort my pulse goes to 130, 140 bpm and I very badly.
Several doctors put me at higher doses as 137 mcg. If I take 137 mcg, my TSH and T4 are becoming "normal", but feel pain in all the nerves, muscles and bones of the body. Definitely that dose not allow me to be well.
Do not know what else to do. I lost my job for my health issue and I am also losing my wife. They all think I'm going crazy and even I'm starting to believe it.
Does it have something I can do to fix this problem?
You have to decide for yourself who to believe; however, I can tell you that both doctors are following the normal procedure of judging your thyroid results based on TSH and also reference ranges. If you will look back at the link I gave you you can note the following important points.
>The TSH level is not a measure of thyroid hormone levels--only the free T4 and free T3 are. TSH is a measure of how
much the hypothalamic-pituitary system is attempting to stimulate the thyroid gland. A "normal" TSH tells us only that the
person doesn't have failure of the thyroid gland. It does not tell us that they have sufficient levels of thyroid
hormone.
>The TSH helps only in
assigning the cause of the hypothyroidism. Ultimately, the true test is a trial of thyroid hormone optimization. Improvement with
this trial is the final proof that a person did, in fact, have insufficient thyroid hormone effects.
>The fact that all "normal" values are not ideal is evidenced also in
many studies have shown clear benefits to having FT4 and FT3 levels within the upper third of the reference ranges.
>When doctors do prescribe thyroid hormone for an elevated TSH, they prescribe only the prohormone T4 (Synthroid®, Levoxyl®).
T4 must be converted to T3 to become active. They typically will give inactive T4 in low doses that just "normalize" the TSH to any
value within the reference range. The result is nearly universal undertreatment of only one kind of thyroid insufficiency--thyroid
gland failure. The fact that one cannot merely "normalize" the TSH is acknowledged in official guidelines that state that the TSH
must be reduced to the low end if its range, and the statement of a top thyroidologist that the TSH often is suppressed when
people are well-treated and there is no evidence that this is harmful as long as the FT3 is not high.
>In the best tradition of
clinical medicine, a physician should prescribe thyroid hormones as needed to eliminate the symptoms and signs of
hypothyroidism without producing any symptoms or signs of thyroid hormone excess.
Now there doesn't seem to be much question that you still had hypo symptoms when you were at the 125 mcg dosage. There is no question in my mind that you needed to raise your Free T3 levels, since scientific studies have shown that hypo symptoms correlate best with Free T3. That is only logical since T3 largely regulates metabolism and many other body functions. The puzzler is why you have such an adverse reaction when you try to raise your med dosage further.
In addition, sometimes when patients feel worse after taking their thyroid meds, it can be due to an adrenal problem (low cortisol), or a low ferritin problem. Note the following.
"The latter can include anxiety or nervousness, light-headedness, shakiness, dizziness, racing heart, sudden weakness, nausea, feeling hot, or any symptom which seems like an over-reaction to desiccated thyroid, but are in reality the result of low cortisol, or a mix of high and low in the early stages of sluggish adrenal function. Low cortisol can also keep you hypothyroid with hypo symptoms."
So, in addition to the suggested tests for Free T3, Free T4, B12 and ferritin, you should also request to be tested for cortisol levels. The best test for that is a saliva cortisol test panel (4 tests taken over a 24 hour period). Few doctors will agree to do that. So an alternative would be a 24 hour urine cortisol test. The poorest test is the serum cortisol test.
>The TSH level is not a measure of thyroid hormone levels--only the free T4 and free T3 are. TSH is a measure of how
much the hypothalamic-pituitary system is attempting to stimulate the thyroid gland. A "normal" TSH tells us only that the
person doesn't have failure of the thyroid gland. It does not tell us that they have sufficient levels of thyroid
hormone.
>The TSH helps only in
assigning the cause of the hypothyroidism. Ultimately, the true test is a trial of thyroid hormone optimization. Improvement with
this trial is the final proof that a person did, in fact, have insufficient thyroid hormone effects.
>The fact that all "normal" values are not ideal is evidenced also in
many studies have shown clear benefits to having FT4 and FT3 levels within the upper third of the reference ranges.
>When doctors do prescribe thyroid hormone for an elevated TSH, they prescribe only the prohormone T4 (Synthroid®, Levoxyl®).
T4 must be converted to T3 to become active. They typically will give inactive T4 in low doses that just "normalize" the TSH to any
value within the reference range. The result is nearly universal undertreatment of only one kind of thyroid insufficiency--thyroid
gland failure. The fact that one cannot merely "normalize" the TSH is acknowledged in official guidelines that state that the TSH
must be reduced to the low end if its range, and the statement of a top thyroidologist that the TSH often is suppressed when
people are well-treated and there is no evidence that this is harmful as long as the FT3 is not high.
>In the best tradition of
clinical medicine, a physician should prescribe thyroid hormones as needed to eliminate the symptoms and signs of
hypothyroidism without producing any symptoms or signs of thyroid hormone excess.
Now there doesn't seem to be much question that you still had hypo symptoms when you were at the 125 mcg dosage. There is no question in my mind that you needed to raise your Free T3 levels, since scientific studies have shown that hypo symptoms correlate best with Free T3. That is only logical since T3 largely regulates metabolism and many other body functions. The puzzler is why you have such an adverse reaction when you try to raise your med dosage further.
In addition, sometimes when patients feel worse after taking their thyroid meds, it can be due to an adrenal problem (low cortisol), or a low ferritin problem. Note the following.
"The latter can include anxiety or nervousness, light-headedness, shakiness, dizziness, racing heart, sudden weakness, nausea, feeling hot, or any symptom which seems like an over-reaction to desiccated thyroid, but are in reality the result of low cortisol, or a mix of high and low in the early stages of sluggish adrenal function. Low cortisol can also keep you hypothyroid with hypo symptoms."
So, in addition to the suggested tests for Free T3, Free T4, B12 and ferritin, you should also request to be tested for cortisol levels. The best test for that is a saliva cortisol test panel (4 tests taken over a 24 hour period). Few doctors will agree to do that. So an alternative would be a 24 hour urine cortisol test. The poorest test is the serum cortisol test.
This week I was in a neurologist and endocrinologist.
Both sent me to do nerve tests. They said that I am very health and my thyreoid is working amazing.
So, I must to believe on who? On my body fellings or all these doctors?
Both sent me to do nerve tests. They said that I am very health and my thyreoid is working amazing.
So, I must to believe on who? On my body fellings or all these doctors?
When you get the ferritin test done, it would be a good idea to also test for serum iron, TIBC, and % saturation. With you mentioning having high ferritin levels, I think you should do the complete iron panel of tests.
I agree with you gimel. It´s very strange.
Today I took 137 and I wished to be dead.
All my back is struggling in pain and my heart is like a race horse.
Yesterday night I was good and this morning too. So I took the pills and voilá: amazing excruciating pain on my body.
Like I said, tomorrow (monday) I have neurologist to talk about it. Let´s see what´s happen.
I just wish to go through this day as soon as possible...
Today I took 137 and I wished to be dead.
All my back is struggling in pain and my heart is like a race horse.
Yesterday night I was good and this morning too. So I took the pills and voilá: amazing excruciating pain on my body.
Like I said, tomorrow (monday) I have neurologist to talk about it. Let´s see what´s happen.
I just wish to go through this day as soon as possible...
T4 meds are relatively slow to reach their full effect. Since the half life is about a week, that means that it takes about 4 weeks for a dosage change to be essentially fully reflected in serum levels. Hard to imagine how a 12 mcg change in dosage could affect you in one day.
If you think you are noticing the effect of going to 137 right away, then you might just experiment with splitting the dose and taking 1/2 in the morning and 1/2 in the afternoon. I can't imagine any reason it would make a difference, but won't hurt to try.
If you think you are noticing the effect of going to 137 right away, then you might just experiment with splitting the dose and taking 1/2 in the morning and 1/2 in the afternoon. I can't imagine any reason it would make a difference, but won't hurt to try.
I have one last question:
Is that possible to "feel" the dosage change between days?
One day I take 137 and another 125 and start to fell lazy, for example.
Is that possible to "feel" the dosage change between days?
One day I take 137 and another 125 and start to fell lazy, for example.
Thanks again for your answer.
I will be tested for B12 and Ferritin. On the past, I always had very high levels of Ferritin on my blood (this is since kid).
Let´s see what´s happen now. I agree with you that I must try to eliminate the subject Hypo first, to start to search for something more.
I will be tested for B12 and Ferritin. On the past, I always had very high levels of Ferritin on my blood (this is since kid).
Let´s see what´s happen now. I agree with you that I must try to eliminate the subject Hypo first, to start to search for something more.
I assumed the med you are taking is T4. Is that correct?
At 125 mcg you have symptoms. When you increase to 137 you said you felt more "alive", but had pains and diarrhea. And your Free T3 was still below the middle of the range.
Of course there is always the possibility of something other than hypothyroid issues; however, since you have had a TT, and are treating the resulting hypothyroidism, it only stands to reason that you should make sure that all the important things related to being hypothyroid are taken care of and evaluated before jumping to other possibilities. In other words, take care of known problems first, before assuming others.
Your Vitamin D was too low. Needs to be 55-60. So I suggest that you supplement with 2000 IU of D3 daily to raise your level adequately. Can you get tested for B12 and ferritin? B12 needs to be in the very upper end of its range for best effect. Ferritin is very important for its effect on conversion of T4 to T3, plus hypo patients with low ferritin reportedly can have unwanted reactions when raising med dosage. Ferritin for men should be about 70 minimum.
At 125 mcg you have symptoms. When you increase to 137 you said you felt more "alive", but had pains and diarrhea. And your Free T3 was still below the middle of the range.
Of course there is always the possibility of something other than hypothyroid issues; however, since you have had a TT, and are treating the resulting hypothyroidism, it only stands to reason that you should make sure that all the important things related to being hypothyroid are taken care of and evaluated before jumping to other possibilities. In other words, take care of known problems first, before assuming others.
Your Vitamin D was too low. Needs to be 55-60. So I suggest that you supplement with 2000 IU of D3 daily to raise your level adequately. Can you get tested for B12 and ferritin? B12 needs to be in the very upper end of its range for best effect. Ferritin is very important for its effect on conversion of T4 to T3, plus hypo patients with low ferritin reportedly can have unwanted reactions when raising med dosage. Ferritin for men should be about 70 minimum.
The question is: in 7 days, my TSH dropped from 4 to 1 and my Free T3 rised a little bit, together the Free T4.
In theses this is my "ideal dosage", but I fell like poisoned when I take 137 mcg. Maybe must I split in two dosages during the day?
I know that 125 is not my dosage because I taking it since two days ago and I am felling bad instead good and a lot of pains on the body.
The problem is, the 137 everyday is not being supported by my body. I have a schedule with my Neurologist next monday to discuss this subject.
In theses this is my "ideal dosage", but I fell like poisoned when I take 137 mcg. Maybe must I split in two dosages during the day?
I know that 125 is not my dosage because I taking it since two days ago and I am felling bad instead good and a lot of pains on the body.
The problem is, the 137 everyday is not being supported by my body. I have a schedule with my Neurologist next monday to discuss this subject.
Hello,
I have the new results of my tests. I am taking 137 mcg and now I have these humbers:
TSH: 1,44 (0.4 TO 5.0 mU/mL)
FREE T3: 0.29 (0.20 to 0.40 ng/dL)
Free T4: 1.33 (0.70 to 1.80 ng/dL)
I have the new results of my tests. I am taking 137 mcg and now I have these humbers:
TSH: 1,44 (0.4 TO 5.0 mU/mL)
FREE T3: 0.29 (0.20 to 0.40 ng/dL)
Free T4: 1.33 (0.70 to 1.80 ng/dL)
At 1.25 your FT4 is adequate; however, at .25 your FT3 is way too low in the range, consistent with having hypo symptoms. I say that because due to the erroneous method used to calculate ranges, they are far too broad to be functional across their entire breadth for every patient. If the ranges were based on healthy adults with no known thyroid pathology, the ranges would be more like the upper half of current. For that reason many members say that symptom relief required FT3 in the upper part of its range and FT4 around the middle of its range at minimum.
Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. Since your Free T3 is much lower in its range than your Free T4, it appears that you are not adequately converting the T4 med toT3. So you should ask the doctor about adding a source of T3 to your meds.
Vitamin D should be about 55-60. B12 should be in the upper part of its range, and ferritin should be about 70 minimum for men.
So, for your appointment tomorrow, you should request to be tested for Free T3, Free T4, Vitamin D, B12 and ferritin. I also urge you to read and absorb the link I gave you above and be better prepared for your appointment. I would also ask the doctor if he is going to be willing to treat you clinically, for symptoms, as described previously. If not, then you will need to find a good thyroid doctor that will do so.
Scientific studies have shown that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all. Since your Free T3 is much lower in its range than your Free T4, it appears that you are not adequately converting the T4 med toT3. So you should ask the doctor about adding a source of T3 to your meds.
Vitamin D should be about 55-60. B12 should be in the upper part of its range, and ferritin should be about 70 minimum for men.
So, for your appointment tomorrow, you should request to be tested for Free T3, Free T4, Vitamin D, B12 and ferritin. I also urge you to read and absorb the link I gave you above and be better prepared for your appointment. I would also ask the doctor if he is going to be willing to treat you clinically, for symptoms, as described previously. If not, then you will need to find a good thyroid doctor that will do so.
Thanks a lot for your help.
The ranges are:
Free T3: 0,20 to 0,40 ng/dL
Free T4: 0,70 to 1,80 ng/dL
TSH: 0,5 to 5,0
My D Vitamin is 33,4 ng/mL (range 30,0 to 100,00 ng/mL)
Tomorrow I will test again my blood to be sure about it. Today I took 125 mcg and I am felling terrible, no air to breath and a lot tired.
The ranges are:
Free T3: 0,20 to 0,40 ng/dL
Free T4: 0,70 to 1,80 ng/dL
TSH: 0,5 to 5,0
My D Vitamin is 33,4 ng/mL (range 30,0 to 100,00 ng/mL)
Tomorrow I will test again my blood to be sure about it. Today I took 125 mcg and I am felling terrible, no air to breath and a lot tired.
I hope it´s more organized now. It´s a craziness of change dosages and it´s killing me.
About TSH, yes, you´re right. My doctor is giving me dosages following the TSH, nothing more.
He saids: TSH until 7 is nice, so let´s leave like this. What a hell is that?
The main problem is: when I change to 137 I fell more alive, but I have this strong pains on my nerves and muscles, and a lot of dyarreia too.
About TSH, yes, you´re right. My doctor is giving me dosages following the TSH, nothing more.
He saids: TSH until 7 is nice, so let´s leave like this. What a hell is that?
The main problem is: when I change to 137 I fell more alive, but I have this strong pains on my nerves and muscles, and a lot of dyarreia too.
DATE TSH T4 L T3 L DOSAGE
18/jul TSH: 4,8 . . DOSAGE 125 MCG
29/set FT4:1,13 . DOSAGE 137
01/nov TSH: 3,79 FT4 1,33 . DOSAGE 125
16/dez TSH: 2,86 FT4 1,36 . DOSAGE 137
22/dez TSH: 3,75 . DOSAGE 125 MCG
06/jan TSH: 4,56 . DOSAGE 125 MCG
09/jan . FT4: 1,25 FT3: 0,25 DOSAGE 137 MCG
18/jul TSH: 4,8 . . DOSAGE 125 MCG
29/set FT4:1,13 . DOSAGE 137
01/nov TSH: 3,79 FT4 1,33 . DOSAGE 125
16/dez TSH: 2,86 FT4 1,36 . DOSAGE 137
22/dez TSH: 3,75 . DOSAGE 125 MCG
06/jan TSH: 4,56 . DOSAGE 125 MCG
09/jan . FT4: 1,25 FT3: 0,25 DOSAGE 137 MCG
Not clear about the test results. You say TSH T4 L T3. Looks like most all the readings are TSH, plus another number, plus the dosage. Please clarify what you have listed. At any rate, it appears that your doctor is medicating you based on TSH levels, which absolutely does not work.
I would like to thank everyone for the help so far.
As complementary information: did checkup with my cardiologist, with my thyroid surgeon and they said everything is fine.
I got to go in orthopedic, because of back pain and they all said that my cardio-respiratory part is ok and that I have no neurological problems.
Not blurred vision, have no sexual problems, have no memory problems (I am a computer programmer) or reasoning.
As I said ... it's all very strange.
As complementary information: did checkup with my cardiologist, with my thyroid surgeon and they said everything is fine.
I got to go in orthopedic, because of back pain and they all said that my cardio-respiratory part is ok and that I have no neurological problems.
Not blurred vision, have no sexual problems, have no memory problems (I am a computer programmer) or reasoning.
As I said ... it's all very strange.
Ok.
Just for information: I had the surgery because my TSH was always in 0001 and my T4 and T3 were normal. I had tachycardia crises and tremors, and after a while were found benign thyroid nodules. So, I had to remove it unfortunately.
The tests results that I have are in a spreadsheet. Basically are these:
DATE TSH T4 L T3 L DOSAGE
18/jul 4,8 . .
29/set . 1,13 .
01/nov 3,79 1,33 .
16/dez 2,86 1,36 . 137
22/dez 3,75 . . 125 MCG
06/jan 4,56 . . 125 MCG
09/jan . 1,25 0,25 137 MCG
Just for information: I had the surgery because my TSH was always in 0001 and my T4 and T3 were normal. I had tachycardia crises and tremors, and after a while were found benign thyroid nodules. So, I had to remove it unfortunately.
The tests results that I have are in a spreadsheet. Basically are these:
DATE TSH T4 L T3 L DOSAGE
18/jul 4,8 . .
29/set . 1,13 .
01/nov 3,79 1,33 .
16/dez 2,86 1,36 . 137
22/dez 3,75 . . 125 MCG
06/jan 4,56 . . 125 MCG
09/jan . 1,25 0,25 137 MCG
That´s a good point.
I've done electromyography tests and nothing was detected. One time they found some kind of metabolic myopathy.
Before removing the thyroid when I was hyper, I had many episodes of muscle fasciculation and kept having for a while after removal.
I've been in several neurologists and made all possible neurological tests. In the end all they say is: take an antidepressant and a soothing, because you are anxious.
I've done electromyography tests and nothing was detected. One time they found some kind of metabolic myopathy.
Before removing the thyroid when I was hyper, I had many episodes of muscle fasciculation and kept having for a while after removal.
I've been in several neurologists and made all possible neurological tests. In the end all they say is: take an antidepressant and a soothing, because you are anxious.
After a TT, the dose of 137 does not sound like a full replacement dosage of thyroid med. When taking thyroid med, TSH testing is a waste of time. You need to know your Free T4 and Free T3 levels. Free T3 largely regulates metabolism and many other body functions. Always make sure they test for both. In addition, hypothyroid patients re frequently too low in the range for Vitamin D, B12 and ferritin. If not tested for those it would be a good idea to do so.
A good thyroid doctor will treat a hypo patient clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
You can get some good insight from this link written by a good thyroid doctor.
http://www.hormonerestoration.com/Thyroid.html
If you can get those tests done, then please post results and reference ranges and members will be glad to help interpret and advise further.
A good thyroid doctor will treat a hypo patient clinically, by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results.
You can get some good insight from this link written by a good thyroid doctor.
http://www.hormonerestoration.com/Thyroid.html
If you can get those tests done, then please post results and reference ranges and members will be glad to help interpret and advise further.
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A good thyroid doctor will treat a hypo patient clinically by testing and adjusting free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not test results, and especially not TSH results. You can confirm what I say by reading this link written by a good thyroid doctor.
http://www.hormonerestoration.com/Thyroid.html
So you are going to have to give your doctor enough information that challenges what he is doing to treat you, and persuade him to treat clinically, as described. If you think you will have a lot of trouble trying to make that happen, we can provide lots of links to scientific studies that confirm what I have suggested about clinical treatment.
You should make sure they test for Free T3 and Free T4 each time you go in for tests. Since hypo patients are frequently too low in the ranges for Vitamin D, B12 and ferritin, you should also get those tested.
Keep in touch and we will be glad to do whatever we can to help you through this.